Just Wondering.

[jingsdog]

I have Sys. Sclerosis which has caused internal damage to my lungs ...joints are also affected by it. So, I have most of the usual symptoms of swollen fingers and toes...really painful joints and secondary Raynauds which is just delightful when you are married to someone who is always too hot and opens windows and doors to cool down while you sit shivering and slowly turning purple! Anyway, I was just wondering if I am a bit odd in some of the 'usual symptoms'....like, the spots which most people with our disease have are red...mine are white. The dry mouth and eyes also which most of us get....I get such a wet mouth it dribbles from the sides of my mouth and I have to always have a store of tissues handy as it really pours out some days! I do have dry eyes though. ...just wondered. x

[Jen3131]

My son turns heating off/opens doors and windows - he can’t get it into his head that mum is freezing! I have white spots and similar mouth issues too (but only at night time thankfully lol). I have a permanent tan to go with the white spots plus ‘botox’ feelings in my face. Eyes are ok to date. X

[jingsdog in reply to Jen3131]

I know exactly what you are suffering from those family members who just do not understand our illness on the temperature fluctuations that make us turn purple and freeze! When I say to hubby...please can you shut the window I am freezing.....he will say that it is 'sweltering' in here! You can't be cold! ..........grrr!!!

[AnnieMc]

Hi there, no I don't think you are odd at all, I suffer from most of what you have said, although being to hot is just as bad as being to cold. I have white spots and red ones, my complexion is horrible and I can't find a cover up makeup which suits. I do have dry eyes and mouth but not the dribbles yet !!! My tongue has had this horrible coating on it for about a year now, Doctor nor dentist know what is causing it, had swabs done and various remedies but nothing clears it. What a miserable disease we suffer from, but you can always find someone worse off. Take each day as it comes and learn to live with it, keep smiling. Wishing you all the best.

[jingsdog in reply to AnnieMc]

I am so sorry for all of us who have horrible symptoms...but am glad that we can 'rise above it' ....sometimes! Good to know that I am not alone in the white spots...the tongue issue Annie is not one of mine so sympathies on that...could it be one of the medications that is causing this?...I get thrush on my tongue with antibiotics so get canistan ...which I put on my tongue and is yuk but does work. So, hope they get to the root of what is causing your tongue problem! I wish you all the best Annie! As to complexion problem...I think there is a cosmetic solution for people with scar tissue problems..if you google 'scar tissue cover up cosmetics' then you could find something there to help I hope. x

[Hidden]

Hi I also have Systemic Scleroderma, all most all the symptoms are internal like you, but very slight Reynauds, dry eyes and mouth, chew chlorophyll gum most of the time, the dry ears are the worst but luckily only happens occasionally but drive me mad when it happens, losing my hair (stopped for the moment), my symptoms seem to take a tour of my body every so often. It is my nose that runs constantly, annoying when you wear a cannula permanently. A lot of my symptoms are disguised by the fact I have other severe terminal lung diseases, and actually the scleroderma did me one favour by calcifying some growths in and on my trachea that were causing even more unpleasant feelings of asphyxiation. Swollen legs are almost permanent as are my toes and wrists. My spots are red. I live alone, yay, always feel cold, it has to be a heatwave for me to leave off my jumpers.